2009-January

Charging into a New Year

It still hadn’t sunken into my thick skull. My life had changed so dramatically that I had to make some major adjustments to continue. But, partially because of me being a recovering Type-A personality, and being an experienced long-term cancer survivor that had always overdone everything, I thought I could continue down the same road.

This plan wasn’t working and I had to find another way to overcome the deficits I had because of my health situation. I faced some challenges I didn’t know how to deal with; things that scared me to death!


List of events

  1. January 7, 2009 — Keeping The Faith
  2. January 14, 2009 — Next Steps – Memory Lane
  3. January 16, 2009 — A New Year A New Plan
  4. January 23, 2009 — Overwhelmed But Marching Forward
  5. January 27, 2009 — Moving Forward – One Step at a Time

  1. January 7, 2009 — Keeping The Faith
  2. Over the past week I have been focused upon keeping the faith. I learned a long time ago that all I can do is the best I know how to do and the rest is up to God. The reason I worded the sentence the way I did is because I do believe we are supposed to play an active role in our wellbeing.

    I often say that it is a matter of body, mind, and spirit. Each part is like a spoke in a wheel that must be maintained in order for the wheel to function in balance and do its job. My job is to help other people learn about living a well-balanced life by maintaining a life-style that is conducive to success.

    Tomorrow I have the honor of participating in a Bone Marrow Transplant Support Group at KUMED where a friend of mine who is past her first year will share with us. I follow her in sharing my story. The subject we will be presenting is “Reentering Life – Your New Normal.” Success stories are very important to help other people see examples of the possibilities if they will make up their mind to go for it and do it. I love to hear about other people that have accomplished a goal.

    This week I also took a trip downtown to visit my office. It was good to see my wonderful supervisor and visit with her for a while about my job. I don’t want to brag here, but she complimented me on my work and told how successful she thinks I am working from home. A little encouragement sure feels good doesn’t it!

    One of my goals is to be a good patient advocate and help people that walk along side of me or follow behind me in this journey as a cancer patient. I like to refer to it as a long-term cancer survivor. To do that I wrote a letter and outlined some specific facts with a list of items I hope will result from my efforts. I made a telephone call before sending the letter so it would be expected. You have to tell people what you experience so they know how to make adjustments. I am attempting to be proactive in that arena.

    Several kind people have written me here on the blog or personal e-mail this week. I want to say “thank you” for your interest and encouraging words.

    My heart is focused upon God and what I am supposed to be doing and thinking about during this seemingly endless time of waiting with so many unknowns. I find reading scripture comforting. And I spend a lot of time in prayer communicating with the only person that has everything under control. My hope is based upon a solid rock and I am not wavering.

    I received two music CDs and one DVD of Rick Settles playing his sax. They have been comforting to my heart as I realize one of my hero’s has gone on before me. It was nice to receive them from his brother who was asked to make sure I got them. I am so proud of Rick’s testimony about what Jesus did for him over the past fourteen years. He encouraged me in person before he departed this world. And his music has been encouraging me since I received the CDs.

    Please remember the loves ones of people that don’t survive this disease. Please remember the ones they leave behind. Please remember the medical teams that care for us as we do our part to survive. God does answer your prayers! I am here today because of them. Thank you so much.


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  3. January 14, 2009 — Next Steps – Memory Lane
  4. I have my next appointment on Friday, and plan to leave that meeting with all my questions answered. It is my goal to make plans with my doctor as I move forward in the next steps in front of me. It has been a busy time since my last update so let me give you a short list of examples.

    First, I mentioned I was speaking along with my friend Diane at the KUMED BMT Support Group last week. I was honored to have that opportunity and we teamed up to share from the perspectives of an auto (me) and an allo (Diane) transplant patient. While her transplant was much more grueling than mine we both had a lot of things in common. And the topic we spoke about “Reentering Life – Your New Normal” proved that one item was the most difficult to deal with.

    For example I started the presentation with three goals. I wanted to drive home some very important points up front then reinforce them with our conversation for the entire meeting.

    1.) Who is the most important person in the world? (You!)
    2.) Who can you count on to tell your story and help you accomplish your goals in life? (You!)
    3.) What does it take to reenter your life after a transplant? (Balance)

    Guess which one we found to be the greatest challenge? Balance! And other people in our group agreed. It was a very well attended meeting and we had a wonderful time sharing stories and supporting each other as we all moved forward from different perspectives and different stages in our lives as transplant patients.

    Second, I have had the opportunity to visit my office a couple of times recently. This week I went in and took care of some business. I really miss the window office space I had looking out at a historic library building that has since been converted to office space. My cubicle is on the ground floor and I had a birds-eye view of the street and the entrance of that architectural wonder that was build years ago.

    As I sat there for a while taking care of some things I scanned the area I hung all my personal belongings on. My space is like a horseshoe with the window along the left side. Then as I would turn to the right I had my computer monitor in the corner. And continuing to the right I had my personal bulletin board space decorated with several key items to keep me focused when I would look up.

    The items included a little poem I love entitled “Letting Go.” By that I had my favorite quote by Dr. Charles Swindoll about “Attitude,” which I’ll share below. Then I had a photograph of Deborah surrounded by a poem she wrote me entitled “You Are Special.” A brochure I picked up at Precious Moments Chapel during a visit years ago with a picture that means so much to me. It has Jesus at the center of heaven surrounded by children. I also had a card with a photograph of a mountain view reflecting in a lake with a scripture verse I love (Micah 6:8). Just to the right of all that I had a reminder I use often produces by Dr. Randy Carlson with a quote at the top of it which says, “How soon ‘not now’ becomes ‘never’.” By Martin Luther. The title of the 10 steps I kept in front of me and read often is “Tips to Avoid Procrastination.” Moving to the right side of my cubical I had several items I used frequently, but the color printed page of the American Flag and an old printed flag that says simply “Don’t Tread On Me” with the stripes running horizontal and a snake stretched out over them with the head in the upper left side corner and the tail at the lower right side corner were reminders of who I serve every day. I also had a logo I helped create for the Heartland Combined Federal Campaign several years ago. The last item was a poem written by a 14 year old young lady on 9/12/01 entitled “A Teen’s Tribute to America.” Memories! Yes, I spent a lot of hours there in that place, with a lot of memories.

    The best part of the last two visits was the time I got to spend with the people I have worked with for many years; especially my supervisor.

    Since I haven’t had to run back and forth between the cancer center and home I have focused on working from home and have stayed busy in my duties and responsibilities. It has been great taking care of business with my team.

    Thank you for taking a few minutes to stop by HOPE in the Heartland to visit and catch up on my medical situation. I trust the information I share here will help many people. It is especially nice to find “Posts” to keep up with your lives as well. I really appreciate your prayers and encouraging words.

    Attitude

    If you haven’t seen it the words go like this:

    “The longer I live, the more I realize the impact of attitude on my life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company … a church … a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past … we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the string we have, and that is our attitude … I am convinced that life is ten percent what happens to me and ninety percent how I react to it. And so it is with you … we are in charge of our attitudes.”


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  5. January 16, 2009 – A New Year A New Plan
  6. I am certain many people that read my story on a regular basis can tell when I get frustrated. You also learn how to read between the lines when I am talking about issues I face. One of the most frustrating emotions I have is the feeling that someone doesn’t really care when I know deep down inside they really do care. We just cannot communicate with each other. I believe this is the case with one of my BMT doctors.

    During my last visit I had to get out of there and go begging for help from an old trusted doctor that had cared for me in the past. It wasn’t the news Doc was delivering, but how he made me feel when he delivered it. Asking for help from Dr. Skikne is what I needed and today I had my follow-up visit with him.

    It was approximately two weeks before my last appointment and today’s appointment, which gave Dr. Skikne time to have my case reviewed by the lymphoma team at KUMED. After reviewing everything I was presented some good information that fueled the hope I hold on to deep down in my soul every day.

    Today I asked Dr. Skikne about the test results Dr. McGuirk gave me last time. You may remember the explanation I wrote in my entry entitled “Once Was Not Enough: Bone Marrow Transplant Number Two.” The laboratory reported after the surgical biopsy was obtained that the lymphoma had transformed into a more aggressive cell type, which they said was “Diffuse large B-cell lymphoma originating in the preexisting follicular lymphoma.” My question was had the two recent PET and CT scans shown an aggressive difference in the growth or merely a simple growth of the tumors. I was assured I had time to make the right choices, but that I needed to get some sort of treatment going in the next 30 days or so to keep things in check.

    After Dr. Skikne reaffirmed what Dr. McGuirk had told me a couple of weeks ago he asked if I had any signs of problems and I explained that fatigue seemed to control me much more than it had before. He noted that then explained some goals for my treatment regimen.

    First, we need to take aggressive steps to stop any progression of the disease. It would be very good if that also accomplishes complete remission. Since I have already been treated with the big gun chemotherapy regimens and an autologous bone marrow transplant on January 15, 2008, we have to look outside the box for new options. That is where the lymphoma team came in to help Dr. Skikne brainstorm my best options.

    The best scenario available to me today is a Phase 2 Study that just opened up at KUMED. I agreed I wanted to follow that guidance of Dr. Skikne and place my trust in his wisdom and experience. I am also confident in his working relationship with the other doctors there at KU so he introduced me to Margret the Research Nurse Manager over this particular study that appears to be exactly what I need.

    I have the consent form to read and jot down any questions I have over the weekend. Next week I will get those questions answered and will sign the consent form to gain acceptance into the study. The goal of this study is to investigate a new treatment regimen that uses VELCADE (bortezomib) in combination with Bendamustine and Rituximab. The target study group is people like me that have relapsed or refractory follicular lymphoma. This is a God given opportunity that I am not going to turn down.

    Second, based upon the outcome of the study I will be participating in, I will still remain in the Bone Marrow Transplant program with hope of finding that perfect donor match. The allogenic BMT is my best chance at more long-term survival of this cancer.

    I also got to see my BMT Coordinator Beth today. She was right there along side of Deborah and me listening and taking notes about my new plans. And I got to see my wonderful nurse practitioner Julie who has helped me work through so many issues over the past year. She asked me if I had taken her advice and read my book again. I answered yes I had taken all her advice and kept it close to my heart. I hadn’t seen Julie for several months because she was working in a different location for a while. I also got to several other people who have cared for me at KUMED over the past year. They are all so wonderful, kind, caring, and loving people.

    Let me close by saying I am praising God for this new glimpse of hope. It seemed, some days over the past couple of months that, I was all alone in this battle for life. I knew down deep inside my soul that wasn’t true. And I have had some wonderful people reach out to me and encourage me in special ways (thank you Michele). Let me take this opportunity to say thank you to everyone that prays for Deborah and me. You all mean more to us than words can express!


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  7. January 23, 2009 – Overwhelmed But Marching Forward
  8. One day not that long ago my Bone Marrow Coordinator (Beth) told me she thought I was simply overwhelmed by everything I am facing in my battle with cancer. It was during a meeting with my doctor and I felt confused and unsure of myself. Those are difficult emotions to deal with for sure.

    The good thing is I have people in my life to help me keep moving in the right direction during these times of despair. I have learned that even thought I am overwhelmed I have to keep marching foreword in my goal of healing and living as normal a lifestyle as I can as a cancer patient. Thank you to everyone that stands along side of me in whatever capacity you choose!

    I know that your prayers are the most important items on the list, but I can tell you I love reading the comments on my blog. Some people choose to send me notes to my e-mail address and that is OK too, but I always worry I’ll miss one of them. It’s just wonderful to have this network of people that care surrounding me at this time in life.

    Perhaps the person I owe the most to is my loving bride Deborah. She gets to see all the ups and downs no matter what is going on. It is the bad times when I have to vent on someone that I hate because I know I get loud and upset and probably unreasonable. I am told how much I am loved and reassured during those times. Thankfully I believe I am able to handle most of those times with dignity and humility because I know God is in control. But I just want everyone to know there are times when I blow it and my loving wife supports me and gets me back on track. I am so blessed.

    This week I worked several days in a row, but took some time off to smell the roses. I can tell the undertow currents of life are drawing me in deeper than I need to be some days. But I also do my best to be responsible and take care of business. The word I always tell people is balance; easy to talk about but difficult to do.

    Yesterday Deborah and I talked briefly with my new nurse that is overseeing the clinical trial I am seeking acceptance into. Margaret answered our questions and told us she anticipates having answers for us by next Monday (1/26/09). Right now I am simply dealing with fatigue and my doctor says he anticipates me getting into this study in plenty of time. It was good to hear that Margaret also feels I will be able to start treatments the first of February if everything goes as anticipated.

    In my last communications with Lindsey and Emily things on their front sound excellent. There are some issues but I am praying for God to help them get through them. And I don’t mean to leave out the other people I am close to, but I don’t like to mention names too often. These two young ladies are an inspiration to me and I am so proud they choose to keep in touch with Deborah and me.

    One of my special friends sent me a CD to listen to this week. I was elated to receive that gift and to listen to the music of John Denver. Music calms the heart and soul.

    I hope everyone will understand that I cannot always answer all the messages I get. But my goal is to watch for the ones where I can help make a difference in someone’s life and focus on keeping in touch with them. Right now I have that opportunity again as a lady is facing the stem cell harvest process. It is a blessing anytime I can reach out and share HOPE in the Heartland.


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  9. January 27, 2009 – Moving Forward – One Step at a Time
  10. This afternoon Deborah talked with Margret at KUMED. I have been approved at KUMED to participate in the Clinical Trial I mentioned earlier. The next steps are to get the trial’s sponsor to approve my case, then to get my medical insurance company’s approval. So far this is looking like a good opportunity for me.

    Today is a special day for me in a couple of ways. First, I left for active duty in the United States Air Force today back in 1972. Second, one year ago it was my first day home after my autologous stem cell transplant. That’s two major milestones in my life (and it’s also my mother-in-laws birthday).

    Everyone always says I don’t tell you how I am feeling enough. So I will simply say I am feeling wonderful most of the time. However, I do deal with the woes of cold winter air keeping me in more than I would like and fighting depression because of the long battle I have been engaged in. I have to be honest it takes a lot of energy to keep my mind focused upon God and knowing that he has everything under control and prayer – a lot of prayer, and I read my Bible on a regular basis. With those two tools at my disposal I must confess it is still difficult sometimes to work and plan inside the walls of my home. I am blessed to get out once in a while for a meal and regular trips to the gym for exercise, but I would really like to jump back into the water and take a swim. I cannot wait until warm weather so I can simply go for a walk outdoors. Never forget, please, never forget, that I am blessed to have every moment I have. God has truly blessed me more than words can express. So I am not complaining I am simply sharing how I feel.

    Now, turning away from my feelings, I want to share about my friend Lori Hope speaking at an American Cancer Society meeting recently. On her blog Lori tells about an incidental meeting she had as she finished her speaking engagement. It was a reminder to me about how people always want to point their fingers at other people that have problems in their lives. Sometimes, I have learned that is warranted, but in the case of illness people need to remember often times it is not the case. If you believe the way I do we are always supposed to reach out to that person in need and not condemn them. Because there but through the grace of God could be any one of us. Please read the story Lori posted at:

    http://www.carepages.com/blogs/helpshurtsheals/posts

    I remain thankful that I have today and that today was a good day. For I can tell you from experience there have been a lot worse days in my life. But with God’s grace and mercy I will walk in the exact footsteps he has planned out for me with him right along side of me. Or as a little poem says he will carry me when I need him to.

    Thank you for your thoughts and prayers. Smile, God loves you too!


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